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Uniting caregivers and patients with rare and severe forms of childhood-onset epilepsy

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CAREGIVER CARE

Everyday advice from everyday experts

+SPOTLIGHT ON TECH

What’s new and what’s next in seizure monitors

and more

+HOLIDAY

HAPPINESSFun family activities,

tasty recipes, and helpful tips

UNITING CAREGIVERS AND PATIENTS WITH RARE + SEVERE FORMS OF CHILDHOOD-ONSET EPILEPSY

United Through Inspiration + Hope

HALLOWEEN FUN WHO’S IN YOUR TRIBE? WHAT’S COOKING?{ + + }

JOHN O’HURLEY IS ON

A MISSIONHis life-long commitment to raise awareness of epilepsy

Vol 1 Issue 1 | Fall 2019

I N S P I R A T I O N F O R

Call it a clan,

call it a network,

call it a tribe,

call it a family.

Whatever you call it,

whoever you are,

you need one. — Jane Howard

American journalist, author, and editor

As a caregiver, you take your loved one into your hands.

When a seizure occurs, you hold them to keep them safe.

When an obstacle presents itself, you guide them through it.

When a treatment becomes a challenge, you carry the weight of their condition.

You are the helping hand for your loved one with a rare and severe form of childhood-onset epilepsy.

We are simply here to lend a hand when yours are full.

And to help make your journey a little easier.

We pass down the knowledge from those who have had a hand in innovation and breakthrough research.

The kind that can bring hope and possible solutions for your everyday struggles.

We empower you with resources and advice from those who’ve had to roll up their sleeves just like you.

Because we know even a little bit of help can go a long way.

Even if it is just a magazine.

One that understands you.

One that puts guidance and support right in the palm of your hands.

2 UNITING CAREGIVERS AND PATIENTS WITH RARE + SEVERE FORMS OF CHILDHOOD-ONSET EPILEPSY

HANDPRINT & FOOTPRINT TURKEY CRAFT TEMPLATE

See instructions on opposite page.

3933

Y O U R J O U R N E Y

3

What’s Inside

4UPCOMING EVENTS

6HALLOWEEN FUN

10SEIZURE FIRST AID

12WHO’S IN YOUR TRIBE?

14LIVING WITH EPILEPSY: EVERYDAY ADVICE Q&A

19WHAT’S COOKING?

21JOHN O’HURLEY IS ON A MISSION

24SPOTLIGHT ON TECH

28IN THE NEWS

32HOLIDAY TIPS AND GIFT GUIDE

5

OCTOBEROrange County Care and Cure Benefi t (October 5)This year’s Orange County Care and Cure Gala will be held at the Hilton Waterfront Beach Resort in Huntington Beach, California. For more information, email [email protected].

SUDEP Action Day (October 23)SUDEP Action Day is internationally recognized as a day devoted to raising awareness about SUDEP and inspiring action to save lives.

To learn more about this day and how to get involved, go to epilepsy.com.

Halloween (October 31)It’s trick-or-treat day! For some great ideas and tips for making it a fun and safe day for your loved one, see page 6.

NOVEMBEREpilepsy Awareness Month and Epilepsy Awareness Day (November 6)All November, the Epilepsy Foundation works to educate the general public about epilepsy, the stigma attached to this condition, and the need for more research and funding.

This year’s campaign is about seizure fi rst aid and remembering the three S’s: Stay/Safe/Side when someone is having a seizure.

See pages 10 and 11 to learn more about the campaign and the three S’s. You can also visit endepilepsy.org.

The 7th Annual Epilepsy Awareness and Education Expo (EAEE) at Disneyland® Resort in Anaheim, CA (November 4–6)Join more than 2,000 participants from around the world and meet other caregivers.

To learn more and register, go to epilepsyawarenessday.org.

LGS Awareness Month and International LGS Awareness Day (November 1) The LGS Foundation kicks off Epilepsy Awareness Month every November with International LGS Day by engaging the LGS community, organizing events, and leading awareness activities. Learn more at lgsfoundation.org.

Illuminate for LGSAsk a local building, park, or monument to light up in green and/or purple on November 1 to raise awareness. Learn more and get a sample request letter at lgsfoundation.org.

National Family Caregivers MonthThe Caregiver Action Network has more information on activities and help for caregivers atcaregiveraction.org.

Dash for Dravet on Turkey Day (November 28)This virtual 5K takes place every Thanksgiving, and may be done anywhere in the United States. Learn more at dravetfoundation.org.

DECEMBERHolidays can be joyful but also complicated for families living with epilepsy. For tips on making your holidays less stressful, see page 32.

Hanukkah (December 22–30)Christmas (December 25)Kwanzaa (December 26–January 1)Infantile Spasms Awareness Week (December 1–7)Every year the Infantile Spasms Action Network (ISAN) hosts a week to educate caregivers as well as physicians and other healthcare providers about this disease and treatments. Learn more at ISweek.org.

Upcoming

EventsHere’s what is happening in the next few months,

so mark your calendar with these important dates.


THE PURPLE PUMPKIN PROJECT

Since 2012, people have been painting their Halloween pumpkins purple and hosting Purple Pumpkin Parties to educate their neighbors and communities about epilepsy.

Painting a pumpkin to display in support of people with epilepsy can be a fun and meaningful activity for your child.

To learn about the origins of the Purple Pumpkin Project and sign up to host your own party, visit epilepsy.com.

You can also visit the Purple Pumpkin Project on Facebook.

THE TEAL PUMPKIN PROJECT

Many kids have dietary restrictions and allergies that make Halloween especially “tricky.” Putting a teal pumpkin on your doorstep means you have non-food treats available, such as small toys.

Some non-food items might include:

• Glow sticks, bracelets, or necklaces

• Pencils, pens, crayons, or markers

• Bubbles

• Mini Slinkies

• Bouncy balls

• Finger puppets or novelty toys

• Stickers

• Stencils

For more information and a full list of recommended non-food items, visit foodallergy.org.

You can also visit The Teal Pumpkin Project on Facebook.

What Color Is Your Pumpkin?

7

Halloween

FUNHalloween is for everyone,

including children with

special needs. The key is

to fi nd activities that are

enjoyable and comfortable

for your loved one. Here are

some suggestions to make

Halloween spooky and safe.


9

FOR THOSE WITH SPECIAL NUTRITIONAL NEEDSMany Halloween treats are high in sugar and carbohydrates. If your loved one is following a special nutritional plan (like the ketogenic diet), there are other options, like sugar-free or Stevia-sweetened candy and keto-friendly bars.

Before Halloween, you might consider providing your immediate neighbors with some treats or even small toys to hand out when you ring their bell. While this may seem a little unusual, it will allow your child to fully participate.

For a keto-friendly holiday treat, see “What’s Cooking?” on page 19.

DO A PRACTICE RUN Before Halloween, take a walk with your child in the neighborhood so they feel familiar with the route and are comfortable in their costume.

THINK ABOUT COMMUNICATION

If your child is non-verbal, consider other ways they can communicate “trick-or-treat” and “thank you,” possibly with a recording device or a decorative sign.

PREPARE YOUR CHILD FOR THE UNEXPECTED Scary costumes, big crowds, and strange noises could unsettle your loved one or even trigger a seizure. Talk to your child about things they might see and hear, and practice ways to keep calm. If you think your child would be more comfortable in daylight, go out earlier and plan to be home by sunset.

CONSIDER ALTERNATIVES Families with special needs children are fi nding creative ways to trick-or-treat that provide a more stable and predictable environment:

• Organize a community trick-or-treat event in a designated area, like a park or neighborhood center

• Connect with neighbors to arrange a “trunk-or-treat” by giving out treats and toys from the back of vehicles parked in close proximity

• Visit your local mall. Many sponsor “Mall-o-ween” events that allow kids to celebrate the holiday in a safe, enclosed space

ADDITIONAL TIPS:

Source: EasterSeals.com


TARGETTarget now offers a range of costumes that can be adapted to work with wheelchairs, from a Princess Carriage to a Pirate Ship. Visit target.com to learn more.

COSTUMESPicking just the right costume can be a challenge for kids with disabilities, including epilepsy. You want to ensure your child is comfortable, doesn’t feel confi ned, and is not triggered or overstimulated in any way by the material or design.

If your child is in a wheelchair, there are many creative ways to use it as part of the costume. You’ll fi nd some great ideas at easterseals.com.

THE MAGIC WHEELCHAIRMagic Wheelchair is an organization that builds costumes for kids in wheelchairs at no cost to families. You may have seen a post about Magic Wheelchair on the Take on Epilepsy Facebook page, linking you to their website to apply for a wheelchair costume. If you haven’t already, you may want to apply now for next Halloween.

See their creations and start the application process at magicwheelchair.org.

View heartwarming videos of kids in their amazing new costumes at facebook.com/magicwheelchair.


11

SEIZURE FIRST AID STARTS WITH USING YOUR BRAIN

STAY with the person until the seizure ends.

Keep the person SAFE and start timing the seizure.

Turn the person on their SIDE if they start convulsing or are not awake.

CALL 911 • If the seizure lasts longer than 5 minutes

• If another seizure starts or the person is injured or in distress

Do NOT hold someone down or restrain them

Do NOT put anything in their mouth

Simple Seizure First Aid. STAY. SAFE. SIDE.

Learn more at: ENDEPILEPSY.ORG

DETAILED SEIZURE FIRST AID STAY with the person until the seizure ends • Remain calm • Check for medical ID • Keep the person SAFE • Move nearby hazards and guide them away from danger • If the person starts convulsing, is not awake, or can’t respond, ease them to the ground • Turn the person on their SIDE and continue to make sure they are SAFE • Loosen anything tight around their neck • Put something soft under their head • Time the seizure • Most seizures end in a few minutes and don’t need emergency medical help • STAY with them until they are awake and alert • After the seizure, reassure the person and explain what happened • Offer to call someone for them • CALL 911 if the seizure lasts longer than 5 minutes • CALL 911 if the seizure repeats or breathing is diffi cult • CALL 911 if seizure happens in water • CALL 911 if person is injured, pregnant, sick, or does not return to full awareness • Do NOT hold someone down or restrain them • Do NOT put anything in their mouth.

STAYSAFESIDE

HELP SPREAD THE WORD ABOUT FIRST AID FOR SEIZURES & THE THREE S’s:

STAY, SAFE, SIDE. Imagine this scenario: Someone near you is having a seizure. As a caregiver to someone with epilepsy, you probably know what to do, but what about your friends and family?

Thinking and acting fast in this situation can make a huge difference. That’s why the Epilepsy Foundation has launched the Stay, Safe, Side campaign to educate the general public about fi rst aid for seizures.

See the following page for more details on the three S’s.

Learn more and share fi rst aid for seizures: Go to endepilepsy.com

Visit the Epilepsy Foundation on Facebook, Twitter, Instagram, and YouTube


NOVEMBER IS NATIONAL EPILEPSY AWARENESS MONTH

FPO

13

Who’s in your TRIBE?Their advice to those who are struggling with the many demands of being a caregiver to someone with a disability is to fi nd your go-to team, or “tribe.” Then take the time to build and nurture those relationships. These are the people you’ll depend on to run an errand, pick up your loved one from school or an appointment, watch them for a few hours to give you a break, or just be there to listen.

In the spirit of the holiday, remember to thank them for all they do. To hear more helpful advice for caregivers from Brad and Karen, go to TakeOnEpilepsy.com.

Who’s in your TRIBE? hanksgiving is a time to refl ect on the things and people in life we’re grateful for. At the top of that list are family, friends, and healthcare professionals who make up the close-knit support network that caregivers depend on.

This Thanksgiving we put our focus on Brad and Karen Thompson, a couple from Canyon, Texas, who serve as counselors and educators for parents of children with special healthcare needs. Their own daughter, Hali, was diagnosed with a seizure disorder, an intellectual disability, and a Chiari malformation (a structural defect in the cerebellum).

UNITING CAREGIVERS AND PATIENTS WITH RARE + SEVERE FORMS OF CHILDHOOD-ONSET EPILEPSY12


Q: My neighbors have invited my entire family over for a holiday open house. They know our younger daughter has epilepsy, but I’m not sure how they or their guests would react if she had a seizure. We would love to go, but would like to communicate our concerns ahead of time and explain how we handle these situations. Would that be appropriate?

A: Having a conversation ahead of time with the hosts of the gathering is important. Not just for the other guests but for your daughter. It will allow you to explain your situation and also to inquire if there may be things at the party that could make a seizure more likely. If it turns out that there are, then let the hosts know that to come as an entire family is not a wise thing for you to do. However, if there is no additional risk of seizure for your daughter, then enjoying the party as a family and socializing with neighbors can be a wonderful way to help people understand that families like ours exist, that we are living our lives and are part of the community. Your presence can be an inspiration, refl ecting the spirit of the holidays.

Q: Most of my time and energy goes to my eldest son who has Dravet syndrome. His siblings are 5 and 8 years old, so while they understand their big brother needs more help than they do, I can tell that they also feel le� out at times.

I’m already spread thin, but I’m feeling guilty and obviously want to be there for all of my kids. Any advice?

A: There can be so much pressure on parents of special needs children to be completely selfl ess at all times and give every last drop they have. These unrealistic expectations can lead you to feel guilty when you really have no reason to.

LIVING WITH EPILEPSY: E V E RY DAY A DV I C E Q & A

There’s no rule book when it comes to being a caregiver. That’s why this column isn’t about doing it perfectly —it’s about talking openly.

Our advice is to start being kinder to yourself. From there, there are lots of little ways you can tweak your routine to make more time for everyone. Dinner together is great, but personally we love family breakfast. It gives everyone a chance to sit down and start the day together.

We’re also big believers in one-on-one time with each child. Kids (even teenagers) crave this attention from their parents—even if it’s only an hour or two a week or a few minutes each day. Follow their lead and, remember, your plans don’t have to be elaborate. A trip to the movies, a walk around the neighborhood, or time reading a book snuggled in bed are perfect.

In our experience, siblings of children with special needs know that their home is different. They usually can accept the reality of not getting as much attention from their parents—but they need to know some time will be set aside exclusively for them. Make sure each child has time with both parents (sometimes, “divide and conquer” is a good approach!).

Q: My family and I were recently out to dinner to celebrate my husband’s birthday. The night was going great until I noticed the couple next to us staring at my daughter who has LGS. We fi nished our meal and I le� without saying anything, but inside I was furious and so hurt for my li� le girl. Unfortunately, I’m sure this won’t be the last time this happens. How should I handle staring in the future?

A: As your child’s biggest protector, it’s understandable to be angry or upset. Staring can leave you feeling exposed and uncomfortable in a way you shouldn’t have to. And while you can’t control other people’s actions, you can choose how you respond to them.

The next time you notice some stares or whispers, consider simply saying “Hello” or introducing yourself. You don’t owe anyone an explanation of your child’s diagnosis, but the simple act of addressing those staring usually brings the behavior to a stop. It may also be helpful to reframe why they’re staring. It could be innocent curiosity or maybe your child reminds them of their own loved one with special needs.

Approaching these situations with kindness and forgiveness is easier said than done, but it ultimately may be the thing that makes you feel better. The less energy we hand over to feeling offended, the more we can enjoy the happiness of having a great birthday dinner like you described.

These answers were crafted with input from caregivers Brad and Karen. Caregivers are encouraged to use their discretion should they decide to follow the advice provided in this column. If you need additional tips or support, be sure to consult your healthcare team.

Karen and Brad Thompson

17

“ While you can’t control other people’s actions, you can choose how you respond to them.”

16 UNITING CAREGIVERS AND PATIENTS WITH RARE + SEVERE FORMS OF CHILDHOOD-ONSET EPILEPSY16

19

WHAT’S

COOKING?What would the holidays be without mouth-watering dishes and treats? Here are some recipes that can be enjoyed by all, including those on low-carb or ketogenic eating plans.

LOW-CARB Cauliflower STUFFINGPREP TIME: 15 minutesTOTAL TIME: 40 minutesYIELD: 6 servings

INGREDIENTS:

• 4 tbsp butter• 1 onion, chopped• 2 large carrots, peeled and chopped• 2 celery stalks, chopped or thinly sliced• 1 small head caulifl ower, chopped• 1 cup (8 oz pkg) baby bella mushrooms, chopped• Kosher salt• Freshly ground black pepper• 1/4 cup freshly chopped parsley• 2 tbsp freshly chopped rosemary• 1 tbsp freshly chopped sage (or 1 tsp ground sage)• 1/2 cup low-sodium vegetable or chicken broth

DIRECTIONS:

1. In a large skillet over medium heat, melt butter. Add onion, carrots, and celery. Sauté until soft, 7 to 8 minutes.

2. Add caulifl ower and mushrooms and season with salt and pepper. Cook until tender, 8 to 10 minutes more.

3. Add parsley, rosemary, and sage and stir until combined. Pour broth over and cook until totally tender and liquid is absorbed, 10 minutes.

Source: Delish.com

KETO-FRIENDLY Coconut Butter PEPPERMINT BARKPREP TIME: 15 minutesTOTAL TIME: 1 hour 15 minutesYIELD: 1 large batch

INGREDIENTS:

• 1 cup melted coconut butter• 1/2 tsp peppermint extract• Liquid stevia (to taste)• 5 squares of Lily’s 70% dark chocolate• Sea salt, chopped or grated• 1 tbsp crushed freeze-dried strawberries• 2 tbsp chopped macadamia nuts• 1 tbsp dried shredded coconut, unsweetened

DIRECTIONS:

1. Line a sheet pan with waxed paper or parchment paper. You can also use silicone molds to make individual portions.

2. Melt the coconut butter until completely smooth. Add the peppermint extract and liquid stevia to the coconut butter. Stir well.

3. Pour the coconut butter onto the lined pan, making sure it does not drip over the sides. Sprinkle each of the toppings as evenly as possible on top. If they sink too quickly, wait a few minutes for the coconut butter to begin setting and then continue.

4. Allow the coconut butter to harden for a least 1 hour in the freezer. Break apart and weigh each piece to add to a meal plan.

Source: CharlieFoundation.org


Please use your discretion before trying out any of these

featured recipes. Should you have any questions about diet or nutrition for

your loved one’s condition, be sure to ask your healthcare team.

21


A MISSION:His commitment to honoring his sister’s legacy and changing the lives of others

John O’Hurley was a sophomore in high school when his life changed forever. After a night of family celebrations, he woke up to the devastating news that his older sister and best friend, Carol, had passed away in her sleep. Though he knew that Carol was living with epilepsy, and had even witnessed some of her seizures, he didn’t know about the risk of SUDEP, or Sudden Unexpected Death in Epilepsy, the probable cause of her death.

In fact, in 1970, no one knew much about SUDEP. In the “dark ages of epilepsy,” as John refers to them, Carol’s journey wasn’t easy. What began as “fainting spells” when Carol was around 7 years old were only offi cially diagnosed as seizures at age 13. At the time, only 2 drugs were available, but Carol found the side effect profi les to be unbearable. Despite suffering from frequent seizures, Carol did her best to lead a normal teenage life—going on dates, hanging out with friends, and going to prom. Because Carol was diagnosed later in childhood, John believes she was shielded from some of the loneliness and ridicule that can come from having epilepsy at a younger age. Everyone loved Carol, and her unexpected passing left so many heartbroken and searching for answers. None more so than John, his parents, and his siblings.

As a large family in a small town, their dynamic changed forever with Carol’s passing. Each family member dealt with their grief differently. For John, it meant taking action—beginning a 39-year journey of advocacy that continues today.

John strives to raise awareness and educate about epilepsy to bring an air of normalcy to the condition. While 1 in 10 people will experience a seizure in their lifetime, epilepsy is still a condition shrouded in secrecy and stigma. That could be because a seizure is an upsetting thing to witness—but John wants to change the way epilepsy is perceived.

The more “normal” epilepsy becomes, the less alone people living with epilepsy—especially children—will feel. John applauds the things that have been done to build a sense of community—from resources on the internet to camps for kids with epilepsy—but it is one of his ongoing goals to create more.

John’s sister Carol as a teenager

“ My heart goes out to the loneliness of the young person with epilepsy.”


23

“If we could isolate a biomarker for SUDEP, I believe that would be

the greatest medical achievement

of this century.”


Another important goal for John is SUDEP research. He believes that—as in the case of Sudden Infant Death Syndrome (SIDS)—if enough focus is put on SUDEP, there’s no doubt that important discoveries will be made. John works closely with the Epilepsy Foundation, most recently on the SUDEP Institute Biomarker Challenge. Determined to bring an end to SUDEP and help people with seizures live to their fullest potential, the Epilepsy Foundation’s SUDEP Institute is challenging researchers worldwide to identify specifi c and sensitive biomarkers of SUDEP to facilitate the development of intervention for people at high risk. With the goal of raising $3 million for this 4-phase challenge initiative, John is taking to the road. He believes that if given the chance to talk to

“ Always be proactive—whether it’s being your own advocate or an advocate for somebody else.”

25 good-hearted people in one room, he can raise a signifi cant amount of money for SUDEP research. And if he can replicate that a few times over, SUDEP can be solved once and for all.

It’s an aspirational goal, but with John’s passion, anything is possible. In the fi ght against epilepsy, his advice is to always be proactive—whether that means becoming your own advocate or being an advocate for someone else. For John, that person will always be his sister Carol, whose beautiful legacy lives on in his life-changing work.

To learn more about the SUDEP Institute Biomarker Challenge and how you can help, please visit epilepsy.com and search for the Biomarker Challenge.

Are there ways to prevent SUDEP?The rate for SUDEP is higher in those with uncontrolled seizures, so doing everything you can to avoid seizures for yourself or for your loved one may help. Here are some suggestions from the Epilepsy Foundation:

• Take seizure medications as directed

• See your epilepsy doctor and other healthcare providers regularly

• Get enough sleep each night, eat well, and exercise as recommended by your doctor

• Avoid alcohol and recreational drugs

• Know what triggers seizures and adjust your lifestyle as needed

• Manage your stress level

• Track seizures in an epilepsy diary. See pages 26 and 27 for information on seizure trackers

• Know your risk for seizure emergencies and SUDEP. Talk to your doctor to understand your risk and make a plan

25

Record New EventRecord New Event

LibrarySync

Quick Capture

GraphsHelp

Built for SeizureTracker By

WHAT’S NEW AND WHAT’S NEXT

Amazon Alexa: You can now connect your Seizure Tracker account to Amazon Alexa and log seizures using voice-activated commands. You can tell Alexa when a seizure starts and ends, and have that information go directly into your account where it can be graphed, edited, and shared.

Electronic healthcare management systems: Soon users will be able to link their Seizure Tracker accounts with several major healthcare record management systems, automatically sharing seizure frequency and details.

Tracking what happens in between seizures: Robert and his colleagues are working on tools that focus on learning about what people with epilepsy are experiencing when they’re not having seizures—eg, their moods, sleep patterns—to gain a better understanding of the overall condition.

Integration of Seizure Tracker with other devices: Plans are in the works to collaborate with the makers of wearable seizure trackers, to collect and analyze data from those devices.

Transition of care: Tools are currently being built that will allow for portability, so that people with epilepsy who are relocating either in a home care or institutional setting can bring their data with them to share with a different set of healthcare providers. This is also helpful when young people with epilepsy transition into adulthood, which could mean new doctors and specialists.

Robert and Lisa are thrilled and gratifi ed that their experiences and initiatives have been benefi cial to so many. As Robert says, “We consider this a community resource. It’s always been our goal to work with the community to standardize seizure patient diaries, and allow people with epilepsy, caregivers, and healthcare providers to make better decisions.”

Learn more at SeizureTracker.com.


THERE’S AN OLD SAYING: NECESSITY IS THE MOTHER OF INVENTION. When Robert and Lisa Moss were given a single sheet of paper with 365 boxes to monitor their son Evan’s seizure activity, their frustration sparked the development of a comprehensive system that reinvented the way people with epilepsy, caregivers, healthcare providers, and researchers track and share information about seizures.

Evan was diagnosed with Tuberous Sclerosis Complex, which causes multiple seizures. Robert and Lisa found that the standard, manual method of collecting seizure information led to ineffective doctor visits. According to Robert, “Sometimes Lisa and I couldn’t even agree on Evan’s seizure activity, which made it diffi cult to adjust his therapy.”

Over time, Robert and Lisa, developed a Web-based diary to enter details about seizures and medications and track Evan’s progress. In 2007, SeizureTracker.com was made available to the general public at no charge. The system allows users to collect a great deal of information about every seizure and share that information with healthcare providers, helping them to make informed decisions about treatment and therapies.

SEIZURE TRACKER APP—MORE FEATURES, MORE WAYS TO TRACK

Upon the success of SeizureTracker.com, Robert collaborated with the development fi rm, Element 84, to create a Seizure Tracker app that is available on Apple, Android, and Alexa devices. As the app has recording capabilities, doctors can use the video to help determine seizure type and prescribe appropriate medicines. The app also allows users to create graphs of seizure events and record rescue medications and vagus nerve stimulator (VNS) magnet swipes during the seizure.

The Seizure Tracker system has evolved over the years, but Robert wants people to know that they can engage with the website or app at their own comfort level. “We still have downloadable tracking logs that you can print off the website,” says Robert. “You can fi ll out the paper logs, enter that info into the website, and get immediate feedback via charts and graphs.”

THE VALET SYSTEM—GIVING ACCESS TO HEALTHCARE PROVIDERS

Early in its development phase, the Valet System was created to streamline the fl ow of information from caregivers and patients to their doctors and nurses. Users share a “Valet Key” that gives doctors or care providers access to seizure data. Doctors can view and enter data and create reports. Valet Key is even being used in clinical settings, such as rehab facilities and assisted living residences, to provide seizure information when caregivers aren’t present.

With more than 35,000 registered users and upwards of 10,000 active accounts at any given time, the data collected by the Seizure Tracker system provide researchers with an unprecedented amount of detailed seizure information. According to Robert, the great majority of Seizure Tracker users are eager to share data that contribute to greater understanding of epilepsy and that may lead to more therapeutic options.

“ NINETY-FIVE PERCENT OF USERS WERE INTERESTED IN SHARING THEIR DATA (IN A WAY THAT PROTECTED THEIR PRIVACY)…AND THEN ALL THIS REALLY COOL RESEARCH RESULTED FROM IT.”

SPOT-LIGHTON TECHRobert Moss, co-creator of SeizureTracker.com. His experiences as a caregiver ignited his quest for a better way to monitor seizures.

Greenwich Biosciences does not endorse or recommend any particular product or service. Not every device or piece of equipment will be best for everyone. It’s important to consider the person’s specifi c needs when choosing a product or device to determine what is right for your loved one. Always consult with your doctor or healthcare team before choosing any health-related product or service.

SAMI

This sleep activity monitor records and analyzes video for unusual activity at night. During sleep, audio-video information is sent to an app that runs on an iOS device such as an iPhone or iPod Touch. The system alerts caregivers to abnormal movements, and recordings can be shared with your doctor.

samialert.com

PULSEGUARD

Originally developed for a child with Dravet syndrome by his father, PulseGuard is a tablet that alerts parents/caregivers to a sudden rise or fall in a child’s heart rate while sleeping, which could indicate a seizure. The tablet comes with a paging solution that will sound an alarm.

pulseguard.org

EMBRACE2

This is the next generation of the Embrace watch. Embrace2 detects possible generalized tonic-clonic seizures and notifi es caregivers when paired with the Alert App. The water-resistant watch also provides rest and physical activity analysis to better understand the wearer’s lifestyle. The Embrace2 requires a prescription.

empatica.com/embrace2/

2726

SOME THINGS TO CONSIDER WHEN CHOOSING A SEIZURE MONITOR:+ What kind of seizures do you want

to monitor (eg, tonic/clonic, drop)?

+ What time of the day or situations are you most concerned about (eg, nighttime or daytime; alone or in public)?

+ What do you want the seizure monitor to do (eg, alert a caregiver or doctor, track and record seizures, save data)?

+ Will the device be used at home, outside the home, or in both situations?

+ What type of device are you willing to wear?

+ Will insurance cover the cost? If not, how much can you afford?

Make sure to talk to your neurologist to discuss all your options before making a decision.

DANNY DID GRANT PROGRAM The Danny Did Foundation provides fi nancial assistance for qualifi ed individuals who need help purchasing certain devices. For more information and to get an application, go to dannydid.org/epilepsy-sudep/devices-technology/

Greenwich Biosciences does not endorse or recommend any particular product or service. Not every device or piece of equipment will be best for everyone. It’s important to consider the person’s specifi c needs when choosing a product or device to determine what is right for your loved one. Always consult with your doctor or healthcare team before choosing any health-related product or service.

As people living with epilepsy are aware, there are many kinds of seizure monitors—from devices you wear on your wrist to a phone app that alerts your doctor. When deciding on a monitor, it’s important to take into consideration your specifi c needs and goals. Here’s a sampling of some that are currently on the market.

SEIZURE MONITORS: EXPLORING YOUR OPTIONS


SEIZALARM

This app syncs with your iPhone and Apple Watch by calling, texting, and emailing your emergency contacts as soon as your loved one has a seizure. GPS can also provide location if you enable this feature.

seizalarm.com

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CONSIDERING A SERVICE DOG? GET PRACTICAL ADVICE FROM A CAREGIVER AND HANDLER.

Tracy Dixon-Salazar, PhD, is the mother of Savannah, who was diagnosed as a child with Lennox-Gastaut syndrome. When she was 18, Savannah received Yukon, a seizure-response dog. Like all service dogs, Yukon was extensively trained to avoid distractions and perform certain tasks, like notifying Tracy and her family when Savannah was having a seizure.

Tracy is also an Everyday Expert for Take on Epilepsy and has written an article full of advice for those who would like to learn more about service dogs. In it, Tracy suggests that families stay realistic in their expectations.

While there are many potential benefi ts of getting a service dog, you may need to wait years before a dog becomes available. Even then, it’ll take some time for the dog to bond with your family and learn the specifi c signs of your loved one’s seizures. A dog also brings added responsibilities—from walks, to veterinary care, to extra training that helps the dog fi t in with your family’s lifestyle and expectations.

The fi rst step to getting a service dog is to check into the various agencies that place seizure-response dogs and learn about their different philosophies, requirements, application process, and costs.

For Savannah and her family, the addition of Yukon made a signifi cantly positive difference. You can read about their experience, see a list of agencies, and get many more tips at takeonepilepsy.com/expert-advice/our-yukon-gold.

The results showed that there are specifi c odors across individuals and types of seizures that the dogs were able to detect with great accuracy. Three of the 5 dogs in the study got it right 100 percent of the time and in under 5 minutes. The other 2 dogs were correct at least 67 percent of the time, and the entire team performed well even with multiple trials.

NETFLIX SHOW “DOGS”

This heartwarming documentary series features stories about the strong bond between dogs and humans. In the Season 1 episode, “The Kid with a Dog,” a young woman’s life is changed by Rory, a service dog trained to detect seizures. This program is a great way for siblings and friends to learn about epilepsy and how families come together to manage and cope.

Dogs from the Indianapolis-based company Medical Mutts took part in a scientifi c study to see if they could anticipate the onset of a seizure in people with epilepsy based on changes in their body scent. The samples were from 5 patients with different types of epilepsy.

CAN DOGS “SNIFF OUT” A SEIZURE?


A NOSE FOR TROUBLE

IN THE NEWS Articles and Media of Interest to the Epilepsy Community

RALPH BREAKS THE INTERNET

This is a follow-up to Disney’s animated fi lm, Wreck-It Ralph, about video game characters. One of them, Vanellope von Schweetz, is an ambitious young girl known as “The Glitch” because she was created with a coding error. The other racers don’t want her or her glitching in the game, but Vanellope is determined to earn her place in the starting lineup. Many in the epilepsy community see Vanellope’s glitching as a metaphor for seizures and identify with her character.

STROBE LIGHTS AND SEIZURES

According to a recent study, strobe lights may signifi cantly increase the risk for seizures in those attending evening electronic music concerts. Researchers studied data from nearly 242,000 people who attended nighttime concerts and nearly 159,000 people who attended daytime festivals where strobe lights were used. They found that almost 3,000 people needed medical assistance, including 39 people for epileptic seizures. In fact, those who attended nighttime concerts, where strobe lights are more intense, were more than 3 times as likely to have a seizure.

Based on these fi ndings, researchers suggest that those with a history of photosensitive epilepsy should either avoid these kinds of events or take proper precautions such as avoiding stimulants, getting enough sleep, not being too close to the stage, and having a clear way to exit if they start experiencing aura-like symptoms. It was also suggested that venues should post warnings for those who could be affected.

FOOD AND RECIPE BLOGS

Bobbie J. Henry-Barron, a senior research nutritionist at Johns Hopkins University, recommends 2 blogs that feature many recipe and menu suggestions, especially for people following special eating plans.

ibreatheimhungry.com has sections for low-carb/keto recipes and menus.

alldayidreamaboutfood.com includes many low-carb, gluten-free, keto, and paleo recipes and products.

These blogs are not intended to provide any health or nutritional advice. Always check with your doctor before starting a new eating plan or making changes to an existing plan.

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IN THE NEWS Articles and Media of Interest to the Epilepsy Community

Remembering Disney Channel star,

CAMERON BOYCEIn sad news, the 20-year-old actor Cameron Boyce died in his sleep on July 6 due to a fatal seizure. He’s best known for his roles on the Disney Channel shows The Descendants and Jessie. Cameron’s family was quoted as saying his “tragic passing was due to a seizure as a result of an ongoing medical condition, and that condition was epilepsy.” Dr. Orrin Devinsky, director of NYU Langone’s Comprehensive Epilepsy Center in Manhattan, said the most likely cause of the actor’s death was sudden unexpected death in epilepsy, or SUDEP. In fact, the fi nal report from the medical examiner did confi rm SUDEP as the cause of death. According to Dr. Devinsky, who was not involved in Cameron’s care, the more uncontrolled the seizures, the more severe, and the more they occur in sleep, the higher the risk.

Cameron was a talented young man who used his fame for good by supporting several worthy causes. He is greatly missed and we’re thinking about his family during this very diffi cult time.

To learn more about the risks of SUDEP, read the feature article on page 20.


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Finally, don’t try to do too much or expect everything to be perfect. Take some time for yourself—whether it’s 15 minutes out of your day to listen to a meditation app on your phone or sitting quietly with a book. Do what you can to “power down” for a while.

Happier holidays


While we can’t promise a stress-free holiday, here are some ideas that could make it bit easier:

Do your best to keep your child in his or her usual routine. You know your loved one’s patterns better than anyone, so try to schedule gatherings and activities at a time of day that’s best for them.

Before holiday gatherings, you may want to talk to your family and friends about how to greet and interact with your child, so as not to upset or overstimulate him or her.

You might consider educating other children who will interact with your child during the holidays by sending out an email that explains your child’s condition and provides some dos and don’ts for spending time together.

Be aware of sensory overstimulation. Blinking lights, unfamiliar sounds, or even unusual odors could affect your loved one. In fact, some families who have children with neurological disorders wait until Christmas Eve to put up their tree and decorate.

Create a “wish list” for friends and family who will be giving your child a present, to help them understand which choices are more appropriate. In general, tactile toys are often a better choice for children with neurological disorders. Try to avoid toys that make sounds, involve too much stimulation, or are too complex.

If opening wrapped presents is too challenging for your child, consider alternatives, such as wrapping them in colorful tissue paper and putting them in holiday bags.

Instead of shopping at a crowded, noisy mall, many families select presents by catalogue or online, and let their loved one point to or circle the toys they want.

It’s that time of year, full of fun, family, food—and stress. Families that have children with special needs and disabilities may fi nd the expectations and activities of the season especially challenging.

Happier holidays

Tips to Make Your

Holidays Better

35

GIFTS FOR KIDS & TEENSWe asked parents and caregivers to share suggestions of gifts for people with epilepsy and special needs. Here are some of their favorites:

ARTS & CRAFTSConsider gifts that will allow your loved one to develop fi ne motor skills and encourages them to use their imagination and express their feelings in a creative manner, whatever their age.

• Nontoxic and washable crayons and markers

• Nontoxic paint and brushes• Nontoxic clay• Safety scissors• Construction paper• Glue sticks• Glitter• Popsicle sticks• Drawing stencils

Echo Drawing is an activity that helps develop observation and drawing skills. This 8-page PDF features a detailed explanation, lots of helpful tips, and hand-drawn designs that range from easy to more challenging. You can download the PDF for a small fee at teacherspayteachers.com.

SENSORY/TACTILETactile and sensory items are meant to promote concentration and stimulation while relieving anxiety. These items may help your loved one stay calm, engaged, and focused by keeping their hands and mind occupied.

• Pop tubes/wonder tubes• Glitter wands• Fidget toys, including cubes, pads,

blocks, balls, and spinners• Vibrating/calming cushions

and pillows• Squeeze and stretch toys

34

Holiday Gift Guide

Gi� suggestions for the whole family, including you!


37

GIFTS FOR SIBLINGSSiblings of children with special needs have a unique place in the family. There are a number of books that speak to their feelings and issues. Here’s one example, plus another gift that involves the whole family:

In Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs, 45 siblings share their experiences as the brother or sister of someone with a disability. Their personal tales introduce young siblings to others like them, perhaps for the fi rst time, and lets them know they’re not alone.

Activity books like Knock Knock: What I Love about Our Family Fill-in-the-Blank Gift Journal allow the entire family to spend time together to create something that’s meaningful and personalized. Simply fi ll in the blanks of this journal and it becomes a gift your family will keep and read again and again.

GIFTS FOR CAREGIVERSWhat to get for the person who spends much of their day looking out for others? Gifts that encourage relaxation and some self-pampering are always welcome.

AARP Meditations for Caregivers blends emotional and spiritual motivation to minimize the strains while helping caregivers view their work as a mission from the heart.

MaxKare Foot Spa/Bath Massager includes a heating function along with vibration and calming bubbles that truly pamper your feet.

What’s in your bag?

We asked caregivers like you what they always have with them

when they leave the house.

Here's what they told us:

SNACKS/DRINKS• Protein bars• Almonds• Chewing gum/

mints• Water bo� le• Chocolate

PRACTICAL ITEMS AND SUNDRIES• A 24-hour supply

(at a minimum) of medication for both me and my child

• Ibuprofen/aspirin• Sunglasses• Dental fl oss• A compact

with mirror• Retractable key

ring a� ached to the inside of my bag

• Lotion • Lip gloss• Phone/charger• Earbuds

DOWN TIME• Pouch with

kni� ing/crocheting project

• Books/podcasts/music

• Relaxation and inspirational apps on phone/tablet

OTHER• For situations

when it’s helpful, cards explaining that my child (or person in my care) has rare epilepsy, pointing them to educational websites

This guide offers a few gift suggestions. You'll fi nd many more at online retailers like Amazon.com. When you sign up for Amazon Smile, you can donate part of your purchases to the charitable organization of your choice.

Greenwich Biosciences does not endorse or recommend any particular product or service. Not every gift in this section will be appropriate or safe for everyone.

36

Fidget toys can help kids focus and channel their energy. There are many fi dget toys to choose from within a range of prices. One that’s highly rated is the VCOSTORE 12-sided fi dget cube.

These bendable, pop-able, Fun and Function Sensory Pop Tubes provide tactile and auditory stimulation as they help build fi nger and arm strength. Available at funandfunction.com.

EDUCATIONALYoung people with developmental delays can benefi t from toys and games that help them build cognitive and fi ne motor skills in ways that are fun and engaging. Some examples include:

• Building blocks: regular and magnetic

• Stacking towers• Puzzles and card games

FatBrainToys.com has a variety of educational toys, some of which are geared to people with special needs. Here are a few for a range of ages that are highly rated:

SpinAgain is visually stimulating and helps with hand-eye coordination. Drop the colorful discs onto the threaded cork-screw pole and watch as they spin fast and smooth to settle on the reversible base.

Box & Balls is a rolling, bouncing, banking, stacking, nesting game that strengthens hand-eye coordination and fi ne motor skills as well as strategy planning.

The pieces of Squigz, an engaging suction toy, connect easily to each other and to any solid, nonporous surface and pop apart. Encourages creativity, fi ne motor skills, interaction, and playful experimentation. It also provides relaxation and sensory stimulation.

OTHER POPULAR GIFT CHOICES• Clocks and watches• Comfortable headphones• Big desk calendars kids can write on• Photo albums with pictures of

the people and places they love• Stuffed animals and dolls• Costume jewelry• Toy racing cars • Stickers

Featuring soft, fuzzy ear pads and headband, these ReTrak Animalz headphones are especially designed for young ears. Choose from eight adorable "animalz."


Holiday Gift Guide (continued)

Bubbles are popular—fun to make, chase, and pop! Some options include: wands, automatic bubble makers, bubble guns, and more.

One that kids will love is the Beyondtrade Automatic Whale Bubble Maker.


HANDPRINT & FOOTPRINT TURKEY DLTK’s Crafts for Kids (dltk-kids.com) is loaded with a variety of fun, easy-to-do, printable crafts for children that everyone can enjoy together. There are educational themes and holiday themes, including this one for fall.

What you’ll need:• Brown construction paper or a

brown paper bag, plus different colors of construction paper

• Scissors• White craft glue• Crayons or magic markers

Crafting your turkey• Detach the turkey template

on the opposite page• Cut out the template pieces

(the turkey’s face and feet). This step may require adult assistance

• Trace around child’s foot (or, for a bigger turkey, around an adult’s foot). Brown construction paper or a brown paper bag work well here. (The foot shape is going to make the turkey’s body)

• Trace around child’s hands multiple times on different colors of construction paper

The more hand prints the better! Combine the hands of the whole family to make one big turkey.

• Glue the handprints onto the body in layers to make the tail feathers

• Glue the face and feet cutouts to the body

• Give your new turkey a name, and enjoy!

FOAM SNOWMANSuper simple and super sweet, this snowman (or snow woman) can bring some holiday cheer almost anywhere.

What you’ll need: • 3 white foam circles• 2 googly eyes• 2 garment buttons• 1 small orange pom-pom• Yarn• White craft glue

Crafting your snowman • Glue the 3 foam circles

together to create the body • Glue the googly eyes and the

pom-pom (for the nose) on the top circle for the face, and the buttons on the middle circle

• Make a 3-inch loop with the yarn and glue it on the back of the top circle so your snowman can hang out. No need to refrigerate!

DECORATINGHOLIDAY COOKIESYou can bake your own treats and create icings and glazes from scratch, or buy them ready made at the store to bake and decorate at home. It’s an activity everyone can help out with, and all contributions count!

For kids on a low-carb or ketogenic plan, you can use sugar-free icing and peanut butter chips instead of chocolate.

Holiday Activities & Projects

At holiday time you want everyone to feel included and be part of the fun. Here are some activities that get the whole family involved, including siblings.

Other cra� s you can create as a family include a Pinecone Christmas Tree and Handprint Santa. To learn about making these and see more great ideas, go to parents.com and search for holiday cra� s and decorating.

I N S P I R A T I O N F O R

Call it a clan,

call it a network,

call it a tribe,

call it a family.

Whatever you call it,

whoever you are,

you need one. — Jane Howard

American journalist, author, and editor

As a caregiver, you take your loved one into your hands.

When a seizure occurs, you hold them to keep them safe.

When an obstacle presents itself, you guide them through it.

When a treatment becomes a challenge, you carry the weight of their condition.

You are the helping hand for your loved one with a rare and severe form of childhood-onset epilepsy.

We are simply here to lend a hand when yours are full.

And to help make your journey a little easier.

We pass down the knowledge from those who have had a hand in innovation and breakthrough research.

The kind that can bring hope and possible solutions for your everyday struggles.

We empower you with resources and advice from those who’ve had to roll up their sleeves just like you.

Because we know even a little bit of help can go a long way.

Even if it is just a magazine.

One that understands you.

One that puts guidance and support right in the palm of your hands.


HANDPRINT & FOOTPRINT TURKEY CRAFT TEMPLATE

See instructions on opposite page.

39

For more resources and information, check us out online at TakeOnEpilepsy.com.

JOIN OUR COMMUNITY ON FACEBOOK Visit the Take on Epilepsy Facebook page and connect with other caregivers.

Here you'll fi nd advice, stories, videos, and so much more.

Uniting caregivers and patients with rare and severe forms of childhood-onset epilepsy

Magazine is brought to you by

©2019 Greenwich Biosciences, Inc. All rights reserved. TOE-06788-0819

CAREGIVER CARE

Everyday advice from everyday experts

+SPOTLIGHT ON TECH

What’s new and what’s next in seizure monitors

and more

+HOLIDAY

HAPPINESSFun family activities,

tasty recipes, and helpful tips


United Through Inspiration + Hope

HALLOWEEN FUN WHO’S IN YOUR TRIBE? WHAT’S COOKING?{ + + }


A MISSIONHis life-long commitment to raise awareness of epilepsy

Vol 1 Issue 1 | Fall 2019

spotlight on tech · the kind that can bring hope and possible solutions for your everyday...

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